– Most my current spots were stable, a few “might” have grown 1 mm. But that is basically error bar range of the measurement, so I’m officially “stable”.

For this entire journey I’ve juggled the various facets of me. Patient. Scientist. Advocate. Nights like tonight, the barriers between those facets break down. As a patient, emotionally I’ll be honest, I had been hoping for shrinkage. So to not hear that – hurt. I just want those damn spots gone. But the advocate in me personally knows many people in much rougher spots than me right now so I am honestly thankful. And the scientist in me pounds on the table and says: No new spots & ~stability is good – I’ll take a long term chronic disease any day!

I continue to be very happy with my decision to tryErbitux (anti-EGFR) mono-therapy without bringing out the big chemo guns. It has meant a good quality of life for me and aside from the rash (which is manageable and to be honest I am completely used to now) – it has been a wonder drug for me without side effects. Although you probably have already guessed this… since I am currently running 10k twice a week for my charity runathon! 🙂 The only real issue with the Erbitux rash is heat. Thank goodness for modern air conditioning (although it does put a bit of a crimp on my beach time this summer but there are worse things to worry about! 🙂 )

I continue to do my mad scientist n=1 personal clinical trial. I think ideally every patient should have a treatment plan to match their personality since there is actually quite a bit of leeway in treatment choices for Stage IV patients. Clinical oncologists can give a range of options. For me, mentally as a scientist, being an active part of my medical team was very important. The mental aspect of the disease is almost as important as the physical aspect! Getting up each morning and pondering if there is any way my treatment plan could be tweaked to maybe give me a slight advantage over the statistics keeps me emotionally engaged and helps me keep my spirits up as a fighter. There are of course many ways for a cancer patient to be a fighter! For me – using my scientific training to actively try to help improve my treatment plan is just my flavor of it. I’ve been tweaking the “standard” Erbitux therapy in a number of ways based upon scientific plausibility and scientific hunch. I am so incredibly thankful that I have an oncologist who is also a research professor that tolerates & allows my mental meddling (dare I say occasionally even enjoys it?)!

Tom:Well I’ve been thinking………. I think I’d like to try changing XXXXXXXX. Scientifically I think it makes sense, what do you think medically? I’ll defer to you if you tell me it’s a crazy idea!

Usually there isn’t a medical answer since a formal clinical trial hasn’t been done to test the tweaking idea. So we end up discussing briefly the scientific pro’s and con’s. I then make a scientific decision that he can medically support — and we then turn to more important stuff like funny medical/science story chit chat and get each other laughing.

I have a very unique relationship with my oncologist 🙂

In exchange for allowing me this empowerment & teamwork atmosphere, I try to pay him back with at least one new oncology research pre-print each visit (“pre-prints” are scientific articles that are posted on the web before the actual journal is published). That way he can look extra smart and super well-read of cutting edge oncology literature around the oncologist water cooler ha 🙂 What kind of oncologist has time to find & read pre-prints while they are incredibly busy treating real patients? The ones that get them hand-delivered to them of course!

As I said, feeling like a member of my medical team is empowering. As a n=1 trial, I’ll never know if the things I’m tweaking helped/hurt/made no difference. If the scan news is good – maybe my tweaks helped, or maybe they made it less good than it would have been (i.e. hurt), or maybe it turned out exactly the same. If the scan news is bad – maybe my tweaks made it better than it would have been, or it was the same, or maybe even my tweaks made the news worse. There is no way to ever know except have faith that although good ideas don’t always work… they can more often than not…

That is the thing with empowerment. Along with more control – you have more responsibility for what happens. Which depending on viewpoint can be a good or bad thing. Even without ever knowing if my decisions were right or wrong, an important thing for me is to be comfortable that I tried my hardest.

When “my time comes” – whether it is in a few years or hopefully when I’m 90 – as a scientist, I don’t want to have any thoughts in the back of my mind “I had that cool idea to try — that I think my doc might have agreed to — but I didn’t have the guts to say it to him…”. I think that would be the worst feeling in the entire world for a scientist in that situation. A feeling I have every intention of never feeling.

I am thankful every day to have a medical team which is perfect for me – so to them, a very public thank you. And thank you for joining me on this amazing journey.

I am always inspired by your positive spirit and the continued gratitude that you show for the things that are going well. I think your oncologist is equally grateful to have you as a patient. Patients like you are the reason they continue in their line of work, although am sure they probably don’t get to see many with your very optimistic perspective! Great job indeed!!!

Hi Sue- We have discussed sbrt and decided we’ll probably use it eventually but only if my lung mets become symptomatic (as of today I don’t have any symptoms). I have heard from some people like you that had a great experience with sbrt and from others where it was tougher. The first 3 tumors I removed, I & my team decided to go the RFA route instead of the radiation route. That is great that you had so many removed with little impact!! Tom